Sanford Children's Specialty Clinic

I hate leaving one star because we've had good experiences in the specialty clinic. However our recent experience was extremely traumatic and we haven't received as much as an apology from anyone here (we spoke to patient relations with zero follow up). Our son was referred to pediatric neurology In August. They proceeded to do genetic testing and informed us it'd take 6-8 weeks for results. October 1st, had a genetic counselor call us at 4:30 pm to inform us our son has Duchenne Muscular Dystrophy (a fatal muscle wasting disease). When we began asking questions, she told us she could not answer too much as she isn't a doctor, but that they will reach out in the next few days. (She failed to send us info and resources over MyChart after promising she'd get that to us right away). 10 days passed and I had not heard from the geneticist or neurologist and on mychart I could see they still hadn't reviewed the findings. In that 10 day period, I called every day trying to get ahold of them and was dealing with gatekeepers that promised they'd call us back. This is when I contacted patient relations and within an hour got a call from the neurologists nurse who said to me "I should have reached out they thought they'd discuss this at our follow-up appointment," which was 2 months away. It has been 223 days and we still have never heard from the geneticist. This left me with little faith in the care they'd provide for my son. We asked for a referral to Iowa City, which got sent within an hour of requesting. The experience with these two doctors and no follow up when we received an extremely traumatic diagnosis was despicable and I truly hope no family has to feel how much pain we felt. We never received information or resources from anyone on our care team at Sanford. Our experience elsewhere was night and day different.

Have to leave a star to put review, otherwise they'd get 0 stars from me. This place is not willing to work with families that travel from a long distance, they have set up appointments and canceled them, scheduled appointments without consultation, which doesn't work for me, I have to travel 5+ hours to get there, they do not take that fact into account. Go someplace else! Especially if you're a native, they must have seem my address and where I was coming from and intentionally moved my appointment. Not worth the hassle! The number they gave me to call goes straight to voice-mail. Way to make a person feel cared for. And no I did not leave a message.

The staff is absolutely lovely here. I have found the receptionists, nurses, doctors and techs to be personable and professional. My only concern is with the response time by the radiologists. Nearly a week out and my son's critical report has not been read. In Minnesota, radiology reports where often back in less than a day, 48 hours max. Seems like an unreasonable wait time here.

Amazing services and lovely staff for many years, diagnosed my brother after a life time of searching for answers. Randomly got slapped with thousands of dollars in medical bills after being told we had to do a mra.

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